Being away from home for cancer treatment: a qualitative study of patient experience and supportive care needs during radiation therapy

Abstract Introduction Supportive care needs (SCN) refer to support required by patients and their families to better cope with cancer. Many rural radiation therapy (RT) patients stay away from home for significant periods, which can lead to the negative effects of both social isolation and cultural disparity. They may demonstrate complex SCN. This study aimed to explore experiences of being away from home by considering patient perspectives of their own SCN. The objectives were to provide a deeper understanding of how these patients think and feel and present a foundation of patient‐centred insights for further research. Methods Thirteen patients participated in semi‐structured interviews; all stayed away from home for RT at the North Coast Cancer Institute for >3 days a week for >3 weeks. The data were subject to interpretive phenomenological analysis: a thorough process of understanding and analysis that is accompanied by reflection to improve researcher transparency. Results Two themes influenced patient experiences of their care: values and identity, and expectations. Patients discussed the value they place on rural life, community connections and health care and referred to information for managing expectations. SCN discussed fell into practical, physical and psycho‐social needs. Conclusions Experiences of culturally appropriate patient‐centred supportive care improve control and confidence. Patient well‐being is influenced by compassionate, caring and respectful connections with others. Several practical ways of managing expectations and promoting the psycho‐social well‐being of patients are discussed, for example, tailored packing lists and easy access to green spaces. Future research can be shaped by lived experiences.

1 Background Unmet needs defined as requirement of some action or resource that is necessary, desirable or useful to attain optimal well-being QoL research shows diagnosis and treatment of cancer impairs patient's: !work and social activities !management of the home !family and other relationships !sleep patterns !sexual activity !levels of anxiety and depression Results -888 surveys !Highest levels of unmet need found in the psychologic domain, then health system and information and then physical and daily living domain. !Patients in remission had fewer needs across all domain than those not in remission. !Females reported higher levels of unmet need in the psychologic and care and support domains than males. !Treatment centre was identified as a significant predictor of reporting some unmet needs. !Patients with multiple sites, lung, colon, rectal or brain cancer had higher needs than breast. !Time since last admission predicted level of unmet physical needs.

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Discussion !One similar prior study had found information to be the most common unmet need, suggesting this might have improved over time. !Psychological need has been identified before by numerous other studies. !Discussed the range of interventions aimed at improving psychosocial support such as tailored counselling delivered by specialist oncology health professional or relaxation training for patients undergoing radiation therapy. !It is likely that the needs of some cancer patients will never be fully met and a level of perceived unmet need will always be present.

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Recommendations !Develop interventions which look at: ! Structural changes to the provision of care ! Improving the interactional skills of health professionals ! Improving the provision of or access to resources ! Providing feedback to clinicians !Clear and regular monitoring to ensure oncology care can best meet the needs of a variety of patients.

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Summary !Does take into account the context of rural/urban centres. !The patients were only considered at one time point in their diagnosis, which was not the same for all patients. !'Some need' was categorised as those patients reporting a 'moderate' or 'high' unmet need and only the top ten ranking needs were reported, what about the other needs? !In comparison to the population the 888 sample overrepresented females; cases of breast, bowel, colon and rectal cancer; and those ages 31-60 years. !Underrepresented males; prostate carcinoma, lung carcinoma, and skin cancer/melanoma cases; and patients ages 71-85 years. !66% response ratelow 9 Supporting Information 1: Review of Literature

Supporting Information 1 -Literature Review
What are the unmet supportive care needs of people with cancer? Systematic review * !Supportive care can be defined as care that helps a person with cancer and their family cope with cancer and its treatment, from pre-diagnosis through the process of diagnosis and treatment to cure, continuing illness or death and into bereavement. Aims: 1.ascertain the prevalence of unmet supportive care needs in adult cancer patients according to time point of the cancer illness; 2.investigate differences in unmet need for different tumour groups and different stages of disease; 3.identify clinical and personal predictors of unmet need; 4.document study design investigating prevalence of unmet need 10 The most frequently reported unmet SCN !Activities of daily living domain (1-73%) !Psychological information (6-93%) !Psychosocial (1-89%) !Physical (7-89%) !57 quantitative studies !Excluded kids/young adults, carers, non-English speakers !Satisfaction studies and Studies translated into English (non-Australian studies) were included !QoL studies were not included

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SCN while on Treatment !The highest levels of unmet need for most domains were identified during treatment !The prevalence of unmet need for each domain had the largest variation during the treatment phase compared to any other time point of the cancer illness !Predictors unmet needs: low social support networks, low income, increasing age, decreasing age (<60 years), advanced disease and not being told that the cancer was diminishing, being geographically isolated from health services 12 Summary !Some need definition is not universal !One factor may be ticked and some need is present !Measures are hardly ever taken across time periods !The results could be skewed because there were more studies made during treatment !Call for more uniform measuring of unmet need Summary !Research demonstrates high prevalence of unmet needs. !Good social support is often related to fewer unmet needs. !The literature suggests that people with more advanced stages of disease or with poor health status are more likely to have unmet needs. !Lung cancer was also identified as a predictor of higher levels of unmet need.

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!Are rurally based patients at a higher risk of having unmet supportive care needs? !Are we measuring the unmet needs of our patients across all domains? !How we can assess their level of need across the patient's pathway? !How can we address those unmet needs best? Ask the patients/carers Further Questions